10 Things Your Child With Autism Wants You To Know

10 Things Your Child With Autism Wants You To Know

I am constantly roaming around the internet in search of excellent articles regarding Aspergers Syndrome and the autism spectrum conditions. Recently I found this article, posted on a Facebook page called Responding to Autism. I am posting this article, 10 Things Your Child Wants You To Know,  and giving complete credit to them.

As parents, it is essential, in parenting children with Aspergers, to understand our children’s temperament, conditions, and general “hard-wiring.” This article will go a very long way to help you do just that! I hope you will enjoy this article as much as I did!

Here is a most recent authorized version of Ten Things Every Child with Autism Wishes You Knew, written by award-winning author and parent, Ellen Notbohm.

This article defines the top ten characteristics of living with autism from the viewpoint of a child.

children with autism

photo credit: Zaggy J. on Flickr Creative Commons

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute — the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).
Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Please just tell me “It’s raining very hard.”

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Here’s a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm.

I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.

P.S.  If you’d like to purchase the book that this article is based on, here it is:

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Comments

  1. says

    Dear Stephen,

    I cried reading this. This line confirms what I know to be true as well: “Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics.”

    I have so enjoyed reading your site, you are a deeply compassionate person and all you write or post of others work is ALL compassionate and leaves great room so that people who have or do suffer any form of autism are not set in concrete. I think that is a wonderful thing to do for all of us, autism or not, and in all aspects of life. It's a gentler and more open minded way and leave room for miracles.

    In my first book, “Naked in Eden”, I talk a bit about growing up with mild autism, but it went completely undiagnosed at the time, which wasn't uncommon back then (I'm older than you are and it was only two years after I went into the rainforest that Asperger's work was translated into English). Anyway, I'd never heard of Autism, let alone Asperger's, until I went into the Australian rainforest, and as wild as it may sound, I was given that message from Nature. I write in my book, “Naked in Eden”, about the healing that slowly took place. It continues in my second book (a sequel), which I am working on now. First book is out this Sept.

    Regardless, there were pros and cons for me that I went undiagnosed. I was not locked into some label that had specific symptoms. I was not “typed”. My parents just thought I was a difficult child. And because I did not have the stigma of a label hanging over my head I simply set about healing myself in the rainforest. It really didn't matter WHAT was wrong with me, because the core healing would have been the same for me.

    Maybe HAD I been diagnosed, my school years might have been easier, especially through the grades. By high school I had put together a veneer that made me look normal, and being naturally happy, and a pretty young woman, I was blessed that by high school people magically seemed drawn to me. Even though nothing inside me had changed, at least the torment at being “different” had ended.

    During my generation (when I was young) anyone even remotely showing “abnormalities” was often referred to as “retarded”, “a slow learner”, “slow witted”, “not one of the bright ones” and so on.

    My life path has been a remarkable journey to reclaim myself, my integrity, my place in the world. And I have done just that. It was fascinating reading this list as I related to so much of it from my childhood, especially #2, #4 and #6. Today I am about as “normal” as anyone out there. LOL!! But to get to this place I walked away from the society that I'd grown up, and was told WAS Life (and if I could not fit into it then I had failed at Life itself. But when I turned my back on what I didn't know how to BE, and went into the wild, I discovered there was a MUCH larger “society” than man's. There was the Natural World that extended from the tiniest ant to the most distant star and beyond. And “I” was part of THAT! and in this larger world I found my place. From there I got to experience a STRONG sense of myself, of Robin, and could then carry that back into the world of man, or society. I had found roots so deep that they were unshakable. I'd found a loving, compassionate and non-judgmental world that embraced me as I was. I guess I could say, I found my God. In that vast larger world filled with compassion I was able to heal.

    I think you are the first person I've told this story to online. Your goodness and compassion inspired me to do so. Dear Stephen, always trust in hope, healing and all possibilities. It is your innate nature to do so, and it is beautiful. Thank you my dear friend. Much love and blessings to you, your beloved family. Robin

  2. says

    Robin, your reply has meant so much to me!

    I have been incredibly and deeply touched by every single account I read of those who have dealt with this condition. It's deeply personal and painful, yet beautiful at the same time to reach of the pain, yet the courage, of those who have grown up with this condition.

    As a parent working to best help a loved one with some of these traits, I have found myself on the road of trying to best understand and give hope to anyone dealing with the wide spectrum. And us “NT's” (whatever that is, because there are very few 'typical' people :) have so much to learn from those on the autism spectrum.

    I don't know if you know it, but I grew up in the Amazon rainforest on the Amazon river! My parents were missionaries, so I spent a lot of my growing up years in that environment.

    It's been encouraging to hear about the healing you received through being in nature.

    I hope you'll come back often to this blog! Your contributions are priceless!

  3. says

    You have given more than you know. I almost didn't post my comment, but I KNEW you would embrace it with compassion. Having suffered and healed, I feel it is important to speak out, just as you are, to help those who have not been seen. Or in turn, to help those who judge (or have “limiting thinking”) be able to see all this in a new light, hence heal themselves (from judgment/negative thinking), and go on to help heal those around them through loving them, embracing their differences, and beyond that to LEARNING from people with differences.

    And yes, Nature is where I found God/Spirit, infinite tender all encompassing compassion. It is why I'm intrigued by your life in the Amazon. That is SUCH a remarkable life experience. Sometime it would be neat to interview about that time of your life, if it feels right to you, and if I can ever get a break in work. I am thick in the midst of book launch, but I will mull over questions that might be fascinating to ask you.

    Thank you for your amazing integrity and compassion. It's a HUGE gift to the world. One of the most crucial gifts any of us can give. And you give it in spades.

    PS I agree, I don't think I've ever met a “typical” person. LOL! :)

  4. says

    Robin, it's so encouraging to read all your work and to see how well you are doing in the midst of your book launch. I recently received a book from Rudy Simone, called Aspergers on the Job, and the subject of opening up the dialogue between employers and employees with Aspergers is the next front I am excited to be working on. Also, it looks like I may have an opportunity to work with a gentleman who is on a project to help neurotypical preschoolers better understand and embrace neurodiversity as presented by conditions like autism. Very exciting! I wish you the best on your book launch!

  5. Phoebe Babe1 says

    Wow this was amazing and It bought a tear to my eye the family thing especially because my brother has autism and he is treated like he doesn’t and is always questioned with why cant he or why isn’t he more like his age. I have autism too. I don’t tell anyone yet I told one friend and they didn’t believe me. This is an amazing article and almost every word is just like me :)

  6. says

    Phoebe, I am so glad you enjoyed this article. Of course, I just reprinted it, but it speaks so much more eloquently than I ever could of the unique perspectives that individuals with autism bring to the table. They are part of a rich tapestry that is called humankind. I recommend for you a book by my friend Rudy Simone, called Aspergirls: Empowering Women with Aspergers. Ms. Simone also has Aspergers, so she knows of which she writes and speaks. She is a great advocate for women on the autism spectrum.

  7. says

    I love this article and while I don’t ever want to take the focus away from why you wrote it, it has so many applications to every child, every person. I don’t have any one I am in close contact with who has a child on that spectrum but I do volunteer for my church and am a very involved community member. This is good for EVERYONE on the planet. Thanks for sharing it. I plan to spread it to my tribes…

  8. says

    @DeniseWBarreto Denise, it means so much for me to receive your feedback.  Also, I’m excited to hear from someone who works so close to me!  I plan to check out your site :)

Trackbacks

  1. [...] are different, but also similar.  The are the same as boys on the autism spectrum in terms of the characteristics they share.  These characteristics can be positive, but they can also present many challenges for both [...]

  2. [...] your child’s unique temperament, characteristics, and strengths.  Also, be willing to understand your child’s challenges within the context of how their brain is wired. “I will not give my son a label: watch him, [...]

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